Weight shifts

It feels like I haven’t posted in a while. This is probably because I haven’t. I again apologize for this. Well let’s get to it, this week was the week of my first evaluation at Shepard Hospital and I must say it went well. I like it there. It’s almost like a mini community for people with disabilities. During the evaluation the physical therapist had me do a couple of things to test my range of motion and test my current abilities. Of course after everything I had to ask if I would get back to normal and she said it was to early to tell and that she would have to work with me some more. So I think I will approach the question again in about three weeks. After we were done they said there were going to call to set up a schedule for next week but I haven’t heard from them as of yet and to be honest I’m getting kind of restless. You see I understand that I have a six month window where my likely hood for getting back to full strength is the greatest. My relapse happened at the beginning of April so that means I’m already nearing the end of my 3^rd month, and I’m not getting a little anxious about everything. But regardless I think they can help me. She seemed to know a lot about my condition and told me things about myself I didn’t even realize. One big thing is that I “weight shift” without thought. I know a lot of you guys are like what is “weight shift.” Well the best way to explain it is have you ever sat on a hard bench and you butt began to hurt. Hurt so much to the point that you would have to get up. Well this is because we have the ability to sense when we have been sitting in a certain spot for too long and blood is not flowing to that area of our body. Well in the cases of someone who has no sensation or weak sensation in those areas such as myself there is nothing to make us aware that we need to shift our weight or get up and let blood flow back to those areas. So every 30 minutes we have to shift our weight to one side for a minute, and then to the other side for another minute to prevent skin sores. Skin sores in some cases can be really hard to treat and can even lead to serious infection and death. In fact we all know Christopher Reeve who played Superman for many years but fell off a horse, which left him fully paralyzed. He died due to a skin sore infection. Me doing “weight shifts” subconsciously means that I’m being to get more sensation back which is a good thing. So I ultimately have to be thankful rite? As far as everything else goes I have to continue to have patience that things will fall through.

Happy thoughts

You know when you get the feeling that all signs point upward, that the universe is trying to tell you something. The last couple of events that has happened to me has been like a breath of fresh air in a room that reeks of depression and bad thoughts. I hate the way I think sometimes because I let my surroundings dictate my thoughts. Something I deem bad happens to me and I’m in a bad mood, something I consider good happens and I’m in a great mood. Whereas I wish I would rid my mind of all the bad thoughts and only think happy and positive thoughts regardless of my surroundings. I was reading an Instagram post about a guy who was in pretty bad condition. He had cancer and the doctors told him he had two weeks to live. That man survived and is living a full and healthy life today. While reading his story I discovered that he was not able to walk and was bed stricken for 8 months. That was the part that hit home for me. That exactly how I am right now. This will the 3^rd month that I have been bed stricken and unable to walk, and of course the doubt comes in my mind that my normal abilities will never come back to me. A lot of the time I feel like I’m regressing instead of progressing. The ability to move my toes came back, but as of or right now I am no longer able to move them. But regardless I want to believe like this guy did. Easier said than done, it’s hard to believe you wont crash when you’re driving blind. But I do know one thing is for sure giving up and throwing in the towel is not an option.  As for my progress nothing significant this week, I continue to strengthen my back and trunk with exercises each day. This has been helping me, but a part of me is waiting until I start at Shepard next week Tuesday. Which I hate because I don’t want to rely fully on them, I want to rely on my self also but I can’t help it. Either way, lets see what happens I’m crossing my fingers for good things.

6.6.13

I know, I know it's been a while since my last post. I really need to get better with posting but alot of time I'm either sleeping or at some doctors appointment. Sometimes it get hard to find the time for this. But I will stop myself right there because that sounds like in excuse and I hate those. I just need to do better. At this point I do see some type of improvement. The improvement is really small, but I am starting to notice things like transfers and getting my legs to move in a different position to be easier. I can't wait to start at Shepard to see how they can help improve my situation. Regardless I just have to be patient and persistent. I've been trying to do small workouts for my truck and back. I've seen much improvements with being able to sit up and make movements without back support. It crazy because I want everything to happen so fast but it doesn't happen like that. I wish I can wake up tomorrow and everything be back to normal or better. But that's farfetched for my situation. Throughout this whole process patience has been the number one attribute that I've learned to have and value. If you can tell from my previous post and this one my mood is alot better these days. I'm not sure why that is. Maybe it's because I can kinda see the light at the end of the tunnel. Though its so far away it looks like a spec or star. To be honest I'm just happy I can see it. My cousin told me the other day he can't wait till this is all over regardless of the outcome. I have to agree with him. If Im going to be walking or bound to a wheelchair for the rest of my life it really doesn't matter. Of course I would love to have one outcome more than the other. But at this point I just want to close this chapter of my life and move on to the next one.

5.30.13

It's 3 in the morning and I'm up. A little bit anxious yes because tomorrow will be the day where I start to receive my medication for NMO. It's weird because I feel like I have alot riding on this. When you look at you future you never want to look at it in a negative light. You want to see youself happy and successful doing whatever it is you wanted to do. That's what drives you to achieve and forfull your dreams and goals. For the past couple of months my future in my mind has looked so dark if I were to put my hand up in front of my face I wouldn't see it. But this week has been different I've started having thoughts of hope and progress and thoughts of a future where I can once again accomplish the things I've always wanted to. The thing is that scares the hell out out of me because I don't want to set myself up for disappointment. It's like my mind attempts to be optimist but because of my past experiences its hard to let go of the pessimist state of mind. I don't know which way to lean. All I can do is hope for the best, but i would lying if I said my mind wasn't all over the place about this.

5.25.13

It's been a few days since my last post. I'm not sure if I mentioned this last time but I was released from the hospital on Monday. For most people they would be ecstatic about this, me not much. Being home means living in a living room where your a side show for all incoming and outgoing traffic. It doesnt allow me any privacy what so ever. It also reminds me of my shortcomings in life giving the fact that I'm soon to be 26 and still live with my parents. But one thing i can say is that my parents have been very, very supportive and accommodating throughout this whole process. I can argue that they have become too accommodating towards me. But I can look in there eyes and see that all of this is rough on them too so I can't fault them for doing anything they can to help. I wish I could say I had some forward progress news for you guys, but I don't. To be honest things seemed to have backtracked a bit. I'm getting alot more spasms then usual and like when everything first started I'm getting excessive tone which cause me to throw myself in aqward positions everytime I try to move my body. Also I've developed a strain in my neck from the rest of my body having to over conpinsate for my legs being none responsive. But I do have some good news and that is I start my actual medication for NMO on Thrusday. I'm crossing my fingers and hoping that this one will bring some serious resolution to my ongoing issues.

Acceptance

I would be lying if I said its easy for me to write today. Sometimes I'm not sure if I'm getting better or getting worse. Something's have gotten better but then other things have gotten worse. It crazy how we as people get up in the morning hop out of bed. Hop in the shower get dressed, and go to work and think nothing of it. Not even taking the time to realize that having the ability to do these things could one day be taken away from us. I hope to get better, I truly do but whatever happens I have to be winning to accept my reality. Everyone says you'll get better but no one know that for sure not even the doctors. All I truly know is regardless I can't let this defeat me and run my life.

5.20.2013

I woke early this morning and was reading over my comments and I'm just appreciative of everyone who are taking the time to comment or even just read my experiences. For a little more than a year now my life has for the most part flipped upside down. I been through so much not just physically but emotionally throughout this process. But I will save those stories for another day. One thing I can say at the moment is that I'm definitely gaining a story from my life. Sharing it with you all has become empowering at the same time therapeutic for me. Maybe it will have the same effect for someone else too. Excuse me I'm just having one of those deep thought moments.